Four years and four months on

Hello everyone, it's ages since I posted an update on John and his recovery. He's toddling along albeit with me giving my usual 'encouragement'. The jury is still out as to whether he has PD or not but we're not letting it beat us. In the meantime, we're out and about visiting friends and family, even travelling as far south from Durham to Buckinghamshire! We're heading for Kew Gardens in July! He has coped although fatigue still impacts. Using wheelchairs and scooters in various venues has made a big difference to our adventures  and also made him feel not such an encumbrance! As if! Would you believe it but he's delighted to get back to the gym so that he can 'grow some more muscles'!!!

It has been lovely to see so many familiar faces from when we first used this website. So heartwarming to see the encouragement to newbies. John with his cooking and bed making, Colin with his consistent support, Nic with her regular contributions, Brenda,, Kay,,, so many more.. This message board helped us in many ways so 'thank you', regulars! 
Veronica and John the technophobe! 

So glad your lives are still full of adventures and how wonderful to get to Kew. We are off to Scotland on a tour that takes in railway trips and a cruise on Loch Ness. We use a door to door coach company and I can cope better if there is little walking and a good hotel. Best wishes to you both.

Oh that sounds great, John. We've been watching all the lovely train journeys throughout lockdown, especially Michael Palin! But the UK ones are so tempting because we don't have to go abroad. Let me know how it goes as I'd love to book one and surprise my lovely husband. He works so hard at keeping fit so it was disheartening to see his mobility deteriorate.

Now? We're cracking on with the new challenges. He can still do lots of things like help me put the duvet cover on (superking size), potter in the garden, general housework etc but he has given up cooking ?. 
Yes, we continue our adventures but I'm not yet prepared to fly or do train/bus journeys until Covid has eased. Instead, we visit family and friends throughout the country and I drive. 
take care, keep safe,

Veronica and John ?

Helloooo strangers!  You won't believe this but I was only wondering how you were last night.   Good to hear that John is coping well with your travels and still keen to be back at the gym!  Once it gets into your blood, you find it hard to give it up.  The difference it makes to your wellbeing, mindstate and just the company of others is so good.  I trust you have bought him a very loud, dayglow, 'lets get physical' true Olivia Newton John style,  outfit to go in !!  Go John Go!! wink xx 

Hahaha. Mr Formality in dayglow? Not yet! So pleased to hear from you though. I stopped posting as everything for us sounded positive and might be off putting. Until Covid, we flew abroad (getting assistance), train journeys (getting assistance) even doing a cruise! Obviously, all stopped with the pandemic. I'm watching out for John F's  report on his railway holiday though. very tempting! We survivors of Stroke - patients and carers - have to be admired for positivity! It was scary having a potential diagnosis of PD, especially as nothing could be investigated for many months. Hopefully, we're now moving forward and we realise that there's lots of things we can still do rather than what we can't. The diagnosis will be sorted eventually. Meantime, 'onwards and upwards' if you'll forgive the quote, ? 

sending hugs and thanks for your response,

V&J ??

Well don't be strangers - you are a true inspiration to us all.  Take care x

Thank you, Brenda. I've sometimes popped onto the message board and been inspired by the consistency of you regulars in supporting others. Maybe I do have a contribution. ? 

Yesterday, I was reading about swollen ankles, changes in medication, etc.  John had continuous leg and ankle swelling. it was interesting to hear the first Consultant he saw re PD Feb 2020,  This guy queried the use of Angitil, prescribed immediately after Stroke. Not appropriate as it is known to cause swelling! He asked GP to reassess meds. We had a dreadful GP surgery so it was ignored. Despite continued requests nothing was done. Covid was the excuse. In fact, not until he was referred to a different Consultant in Dec 2020, and the same query was raised, did this med get changed. Even then the surgery had to be pushed.  He is now on Candesartin and the difference was amazing. He does exercise with a rubber band every day plus other stretching exercises. He can walk, very slowly, up the street and back. Hey, he knows more people around us than me, hahaha ? Plus, we go to the gym when we aren't out having adventures!  ? 

so, that's our little contribution to 'The Experiences  of a Stroke Survivor'



They are useless aren't they?  I chnged my Dr last Dec. I was sick of his attitude towards me since my stroke and the general lack of care since Covid started.  Why are they still not doing face to face appointments?  There really is no excuse now.  Good that John got his meds sorted.

A small step at a time! Take care xx

Hi Brenda, just putting in my sticky beak, as usual ....  The very worrying thing is, how often medical professionals make mistakes. It's one thing to perhaps be a bit negative or tell someone to do more exercise etc, but it's a serious matter when medication is prescribed incorrectly.  It scares the living daylights out of me.  

You have had to go to the trouble of changing your GP; does your previous GP realise why you've had to do this, will they change the way they practise??? I think I'd better kick my soap box into the long grass, before my large and un-checked mouth gets me into trouble!!  

Yes, it's lovely to hear from Veronica and John, we always love "news"!!  ?

Best wishes to you too Brenda xx 


Hahaha! Nic, you're always a source of brightness on the dark days! I agree changing GP would be my own choice but the surgery is within walking distance. We're looking ahead to when we can't drive although what the future brings for the NHS goodness knows. One good thing we heard, the GP who told John he'd had 'a Stroke and to get on with life' has now left - to much cheering! 

Here's to sunshine for us all - but not too hot, this summer, ☀️☀️

V&J  ☀️